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Leukemia Sucks…..So Does NF-1

Leukemia and NF-1 Can Effect Anyone

On August 29, 2014, my daughter was diagnosed with Leukemia. Her doctor admitted her immediately to UCSD for a 30 day stay. That within the next week, on her 33rd birthday, She began an aggressive week long treatment of chemotherapy, followed by blood transfusions. So far they have been successful, but more treatments will continue through January 2015 requiring her to stay at the hospital once a month until the month for six days each month.

My daughter is the mother of two beautiful girls 5 and 8 years old. Her oldest daughter when she was 6 months old was diagnosed with NF-1, Neurofibromatosis type I.

Occurring in 1:3,000 births, web characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.

For 7 1/2 years she and her husband spent every hour of every day, of every week of every month, probing and examining their daughter, searching for any new bump, growth or abnormality. Worrying over a headache or joint pain their daughter may have complained about and making yet another appointment for an MRI. Her mom and I along with our entire family and many friends are very helpful and supportive in helping them and our granddaughter. Now we are helping my daughter too.

It’s unbelievably tough to see what she is putting up with and going through and not be able to do a damn thing. I can’t take the treatment for her, I can’t get sick for her. I can only sit with her through her morning Chemo treatments, while her mom sits with her during her evening treatments. We can drive her to the infusion center for tests and platelet infusions if needed, watch her kids and pick them up from school…..but we can’t make her not hurt. That’s tough.

So today we’re waiting to get the call from the hospital for her to come in for her next round of Chemo. This will be a 6 day stay and then she’ll get to come home. Her blood levels will get screwy, eventually drop to about as low as they can, making her very vulnerable to getting sick. Her bones will hurt terribly, can’t walk and her vision blurry. After a few platelet infusions and a possible blood transfusion, she’ll get her levels back up and then she’ll feel better, much better. This will give her about two weeks hopefully, of felling pretty good. Then she’ll do it again next month and the month after that.

While she is out of the hospital, on Mondays, Wednesdays and Fridays she travels to the Bone Marrow Transplant/Infusion center for blood tests. They see what her levels are and determine if she needs an infusion of platelets or a blood transfusion or hopefully nothing at all.

I have been able to take her to these appointments, where I have met and seen so many others doing the same thing. Fathers with their sons, daughters with their mothers, mothers with their daughters, husbands with wives, wives with husbands, friends with friends and patients by themselves. Many are very sick, others you can’t tell. But each and every one of them become attached in some way. They support each other, celebrate if its found that a treatment is not necessary or blood levels are on the rise. And always encouraging to each other. And this includes the nurses and RN’s, very wonderful people!

I wanted to share this experience and it’s not over yet. I will continue to share and update, it helps me with this whole situation. Others can too please.

Great strides have been and are being made in cures and treatment for both NF, cancer and leukemia. I have seen more these last couple of months than I have for my entire life before. I have never prayed so much in my life, apologized endlessly for things I’ve done wrong and regretted so very much.

I will do things different and have started doing so, although it’s been hard, I might add. But it’s getting easier every day. One thing I am doing that I have never really done before, is to step outside in the early morning, look up and thank God for the beautiful day and allowing me and my family to be part of it.

Yes. Leukemia Sucks…..So Does NF-1



Safe Rooms and Storm Shelters

Safe Rooms Provide a Safe Place In The Event of An Emergency

I wanted to post this once again after this weekends devastating tornadoes and severe weather. I read that these rooms and storm shelters are gaining popularity and sales have increased after the recent string of deadly tornadoes.

A safe room, also known as a panic room and storm shelter is a fortified room that is installed in a private residence or business to provide a safe place for inhabitants to hide in the event of an emergency. Safe Rooms are used in severe weather situations and provide a safe place during other emergencies.

Safe Rooms Around the WorldA safe room

  • In Mexico, where kidnappings are relatively common, some people use safe rooms as an alternative (or a supplement) to bodyguards.
  • In Israel, bullet and fire-resistant security rooms have been mandated for all new construction since 1992.
  • Since the 1980s, every U.S. embassy has had a safe room with bullet-resistant glass.
  • Perhaps the largest safe room will belong to the Sultan of Brunei. The planned 100,000-square foot room will be installed beneath his 1,788-room, 2,152,782-square foot residence.

Why are safe rooms and storm shelters used?  Reasons include:

  • to hide from burglars. The protection of a safe room will afford residents extra time to contact police;
  • to hide from would-be kidnappers. Many professional athletes, actors and politicians install safe rooms in their houses;
  • protection against natural disasters, such as tornadoes and hurricanes. Underground tornado bunkers are common in certain tornado-prone regions of the United States;
  • protection against a nuclear attack. While safe rooms near the blast may be incinerated, those far away may be shielded from radioactive fallout. This type of safe room, known as a fallout shelter, was more common during the Cold War than it is today;
  • to provide a safe place and social distancing in the event of a serious disease outbreak; and
  • fear of an abusive spouse.
  • Severe weather protection

History of Safe Rooms as a Safe Place

Safe rooms can be traced back as far as the Middle Ages. Castles had a “castle keep,” a room located in the deepest part of the castle, which was designed so the feudal lord could hide during a siege. In the United States, safe rooms were used in the Underground Railroad during the 1800s, where secret rooms hid escaping slaves. In the 1920s, hidden rooms stored Prohibition-banned liquor. Safe rooms designed for weather protection have their origins in storm cellars. The features of the modern safe room are mostly derived from fallout shelters during the 1950s, which were created in response to the fear of nuclear attacks.

Various events of the past decade have spurred a rise in the popularity of safe rooms, including New Year’s Eve during “Y2K,” the terrorist attacks in New York City in 2001, and the subsequent anthrax poisonings that led to fears of civil unrest and war. Yet, it was the 2002 film Panic Room, starring Jodie Foster, that heightened public awareness of safe rooms and their perceived need. In fact, the term “panic room” became the popular name for what were previously known as “safe rooms” as a result of the movie, although companies that create the rooms still prefer to call them “safe rooms.”

More Than Severe Weather Protection

Today, they have become a status symbol in wealthy areas such as Bel Air and Manhattan, where it is believed there are thousands of such rooms. However, it is difficult to estimate the number of safe rooms because many homeowners will not publicize the existence of their safe rooms. Even real estate agents tend to hide the location of safe rooms, or even the fact that a house contains one, until they know a buyer is serious about purchasing the house.

Location of Safe Rooms

The safe room’s location must be chosen carefully. It should not be located in the basement, for instance, if intruders are likely to enter the house from that location. Ideally, occupants will be closer than the intruders to the safe room at the time that the intrusion has been detected. This way, the occupants will not be forced to cross paths with the intruder in order to reach the safe room, such as in a stairway. Occupants can plan multiple routes to a safe room to avoid detection by the intruder who is blocking the main route.

Design, sound insulation Construction

Safe-room designs vary with budget and intended use. Even a closet can be converted into a rudimentary safe room, although it should have a solid-core door, sound insulation and a deadbolt lock. High-end custom models costing hundreds of thousands of dollars boast thick steel walls, video banks, computers, air-cleaning systems, bulletproof Kevlar®, and protection against bacterial and chemical infiltration. Recommendations for specific design elements are as follows:

  • doors:  These are one of the most critical components of the safe room design. A bullet-resistant door with internal steel framing can weigh several hundred pounds, yet it must operate smoothly, easily, and without fail in an emergency. The hardware must be selected to provide substantial, secure locking without compromising the smooth operation of the door itself. Most importantly, it must allow the door to be secured quickly, preferably from a single control point. The hardware should not be capable of being overridden or tampered with from the outside.
  • floors:  Concrete is an adequate material for the floor. In other forms of floor construction, such as wood, it is important to provide supplementary protection suitable to the anticipated type of emergency. As safe room construction often uses heavy materials, it is important to ensure that the floor can support a large load.
  • sound insulation:  The attackers may try to verbally coerce the occupants to leave the safe room. Effective sound insulation will limit the ability for such unwanted communication. Also, sound insulation will prevent the intruders from hearing phone conversations between the occupant and police.
  • walls and ceilings:  Wall construction that spans from floor to ceiling is generally preferred because of the structural continuity of the framing. Bricks and blocks, while bullet-resistant, can become dislodged from repeated sledgehammer battering. Steel stud walls, braced with additional reinforcing ties, can be faced with steel sheet or bullet-resistant materials, such as Kevlar®. These, in turn, may be covered with tile, sheetrock or other decorative finishes. Steel and Kevlar® panels are available in large sheet sizes.  This helps minimize the number of joints that can be potential weak points of an assembly. It is important to not overlook penetrations that may be made for light fixtures, power points or plumbing pipes. Duct-work that passes through protected walls should also be carefully considered to ensure that the security is not breached or they are not used to transfer poisonous gasses into the safe room.
  • cameras and monitors:  Concealed cameras located outside the room enable its occupant to secretly monitor the movement and numbers of intruders. Effective camera systems may incorporate one visible camera outside the room so that an intruder disabling the exposed camera may not think to look for hidden cameras.
  • generator:  A self-contained power system is standard in most higher-end safe rooms.

Items to keep in a safe room:

  • bottled water and non-perishable foods:  There should be a small provision of bottled water and non-perishable foods (such as dried trail mix);
  • communication devices:  Ideally, all three of the following devices should be stored in the safe room;
    • a cell phone and charger, which are convenient, but they may not operate through thick safe room walls. The charger will not work if no electrical receptacles are installed, so those are required, too;
    • a land-line phone:  Since cell phones may not work in a safe room, or because they may lose power, a land-line phone is recommended. It should, however, be on a separate line from the rest of the house so that intruders are less likely to disable it;
    • a two-way radio;
  • blankets:  Occupants might be there for a while, so they might as well be comfortable;
  • first aid kit:  Even if occupants make it to the safe room, they may have been injured by the intruder en route. It is unlikely that he will allow the occupants to re-enter the room after they leave it to look for band-aids;
  • prescription medication:  Small quantities of necessary medications should be stored in the safe room, or else occupants may be forced to surrender their position during a medical emergency. Having a hundred cans of tuna and a flat-screen TV does little good if your only asthma inhaler is left on the kitchen table;
  • flashlights:  Severe weather can knock out electricity to the house, or intruders may intentionally cut the power;
  • sanitation supplies:  Safe rooms built on a budget often don’t have a toilet. A bucket can be used as a low-cost alternative;
  • weapons:  If the intruders manage to enter the safe room, occupants should be prepared to defend themselves. Pepper spray is a common choice, and firearms are certainly no less effective; and
  • gas masks, which may become necessary in the event that the intruders force poisonous gas into the safe room. Where an odorless gas might be used, an electronic device may be installed to detect any noxious fumes or poisons.

In summary, safe rooms and storm shelters are increasingly popular rooms designed to protect occupants from various types of emergencies such as severe weather.

Safe Room and Storm Shelter ….

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